Friday, 2 March 2012

No answers

I promise this blog won't just be about me moaning. I am most of the time a very positive, glass half full sort of person. I have long since learnt to accept Max's disability and a lot of the time wouldn't have it any other way. I don't spend time thinking what would Max be like without his chromosome deletion, because he wouldn't be the Max we know and love without it. Max is funny, happy, full of energy and melts my heart on a daily basis. The love, pride and admiration I feel for this little boy is intense. Max has and continues to amaze us with his determination and sense of fun. He has made me appreciate things that before having him I took for granted , his innocence and the pure joy he experiences from everyday things is infectious.
There is a but and that but punctuates our lives on a daily basis. The but is Max's behaviour. This evening we have experienced over an hour of Max hitting, biting ( us and himself), kicking, head butting and attempting to destroy our home. Why? I don't know the answer to " why". Is it behavioural? is it sensory?. How do we stop it? We have had years of input from a behaviour team, a learning disability nurse and a Psychiatrist. We have spent a small fortune on therapy. We have and still do use visual timetables, behaviour charts, time out, rules boundaries. He takes medication to attempt to control it. Things have improved in some ways, eighteen months ago he displayed these behaviours indiscriminately, at school and with carers. Now he saves these outbursts for Richard and I. They are shocking, scary and violent. They leave us and him drained and exhausted. They isolate us and him and at times leave us feeling desperate. It's lonely having a child who attacks himself and others. We are as a family pretty resilient. We try to deal with the crises and move on, but there are days when it feels so bleak and hopeless and I guess this evening is one of those days. We cope by drinking far too much wine and by getting some fantastic support from our carers. We both worry about what will happen if this behaviour continues as he grows older. Currently the pressure on Richard is immense he is the only one who is strong enough to restrain Max, which means he needs to be around almost all of the time.Most of all we both feel for Max , it must feel terrible to feel this intense rage, it's almost like something takes over him, he ends up red in the face and exhausted.I will continue to look for answers and solutions but currently there don't seem to be any that we haven't tried. We just have to hope that as Max's speech improves that he is able to find other ways of expressing himself that doesn't involve violence and self harm.

5 comments:

Just wanted to say really well written, and I completely related to every word - as I sat reading with my glass of wine after a tough day with my son. Despite trying to stay positive and strong, there are some days after taking a battering from your child, you feel completely down and exhausted. You do need your family, friends and the odd glass of wine or 3 to pick you back up again - and usually the next day, my son does something which will melt my heart and it is all forgotten until the next meltdown. Look forward to reading your next blog. V x

etc approaches then maybe you need to consider medication? some parents from I. 's school just posted replies on our parents forum to someone considering risperidone for this kind of behaviour (all at his school are ASD and severe LDs) - the replies were incredibly positive about the good impact and few side effects eg one mum saying she was able to take her son on tube on her own for the first time in three years.... that behaviour went from very aggressive harming to self and others to more manageable "pacing" etc.

as he gets bigger and older you cant rely on holding techniques. I. is generally good but has his cross moments - but usually manageable as we now have good communication system - but i can imagine that if that were multiplied throughout the day and nothing was working then it would be a nitemare for all....

what communcication does Max have ? i thought he had some verbal speech?

Thanks Natasha .... Max takes Strattera ( for past 9 months) it has helped to some extent and has Definately had a positive impact on his cognition, language and concentration. We have discussed risperidone with his Psychiatrist but because one of the side effects is weight gain and part of Max' s syndrome is an issue with obesity we decided against it. Max has pretty good speech, speaks in sentences, probably at around the level of a typically developing 3 year old, however I do think frustration does play a large part in his behaviour. We use visual timetables and some makaton to reinforce his understanding but since taking the medication he has really taken off with communication. I do think some of his behaviour has become a habit and he can now control it at school. The Psychiatrist hopes that puberty will have a positive influence but who knows. You are right about the holding it's not a long term solution and I am not strong enough to do it now. We have been in touch with challenging behaviour group before. Max is complex and his learning disability is although moderate , probably less severe than most of the young people with the most challenging behaviour.